Rochford, a 41-year-old business analyst, started on the drug Tysabri when it was introduced in New Zealand three years ago and said since being on the medication the relapses that damaged his nervous system and caused a new disability have stopped.

“I was developing new lesions which are the marks on the brain that you can see in the MRI scan on a fairly regular basis and ever since I started Tysabri that has stopped.”

Rochford was diagnosed with MS in 2011, but it was not until he developed a second disability within the same year and had trouble walking that he was able to get access to drug.

But it is that same walking disability that is now preventing him for getting funding as he can no longer meet Pharmac’s criteria of walking 500m unaided.

Multiple Sclerosis NZ’s submission urging Pharmac to start people on the drugs earlier and keep them on it for longer is to be further considered by the agency’s primary clinical committee in November.

MS patients currently have their disability progress graded between 0 and 10, where the higher score indicates the greater disability. Under the current criteria patients lose access to the drugs if their score increases by 2 points or exceeds 4.5 and does not improve within six months.

But MS NZ vice president Neil Woodhams said the funding did not go far enough. MS NZ wants sufferers to be funded for the drugs until they reach a level of 6 or 6.5 and to be eligible to start the drugs based on MRI activity rather than having to wait for a second symptom or relapse as they do now.

World-leading Australasian neurologist and MS Researcher Professor Helmut Butzkueven, who presented to Pharmac in May, said Pharmac’s criteria around who can access Government funding for the drugs goes against international evidence and means some of the sickest MS patients who would benefit the most from the drugs were missing out.

He said the Government agency was making its decision based on its budget and not evidence.

MS NZ estimates about 900 people are currently receiving the funded drugs fingolimod (‎Gilenya) and natalizumab (Tysabri) and a loosening of the criteria would mean a further 500 to 600 people would qualify to have the drugs funded.

“The results of long-term outcome studies show these drugs are of greatest benefit in the sickest patients, where they significantly delay ongoing progression of disability and consequent loss of employment and quality of life.”

Butzkueven, who works at The Alfred Hospital in Melbourne, said while Pharmac must be acknowledged for leading the way in funding new generation drugs, its criteria meant patients who deteriorated on a drug by a certain amount then had to stop the medication.

“That effectively means if you have very active MS and the drugs are slowing that down significantly, but not perhaps completely then the response to having that severe MS might be that Pharmac is asking you to stop the medication which can result in disastrous consequences.”

Butzkeuven said the drugs should be available to patients until the MS was so severe that they had entered the later stage of the disease and the medication was not useful.

“But people are basically stopped on these drugs far too early and this is at a time when their quality of life is not that badly impaired by the MS yet. On the basis of meeting a particular neurological score – a change in the neurological score – they stop the drug and all hell breaks loose.”

He said Kiwi patients were full of fear and dread every time they were due to be scored by a neurologist, due to a fear of losing the funding.

MS NZ vice president Neil Woodhams said a loosening of the criteria would mean another 500 to 600 people would qualify to have the drugs funded.

Woodhams said in Australia the number of people with MS who were of the working age but not working had reduced by 10 per cent in the past eight years since they had better access to MS drugs and he believed New Zealand would see similar results.

MS patient Brendan Rochford said while Pharmac would save about $26,000 a year cutting the drug he relied on, it would mean he couldn’t work and would need disability payments from Government.

Rochford can now walk between 20-30m using a walking stick, but for further distances needs a motorised wheelchair.

“I understand for some people not being able to walk is the be all and end all, but for me it doesn’t affect my ability to work …

“I can still contribute, I can still pay taxes, I can still be a member of society. Take me off the medication and you are speeding up the rate to which I will not be a member of society anymore.”

Rochford said while Pharmac could save about $26,000 a year in funding the drug he relied on to contribute in society, it would also mean he couldn’t work and would need disability payments from the Government.

“Basically they would be shifting my burden from one part of the public purse to another part of the public purse.”

He said having to meet the 500m talking was a burden that had hung over him each year caused unnecessary stress – something MS patients were told to avoid as stress could make the condition worse.

Due to how successful the drug has been for him the pharmaceutical supplier had agreed to provide it to him directly and take a hit on their own profit, but Rochford said not all MS patients were as fortunate, and still feared the day when their funding was taken away.